Hi, although I havent posted much,Ive been reading these posts for some time . My son is 16 years old, he had KP as a baby, but I was told the bumps on his cheeks would go away..they did...When he was about 12 the redness on his cheeks became more evident. By the time he was 13 he was frustrated by the redness, and we went to a dermatologist., whose first reaction was "its normal red skin", then when MY SON asked if it was rosacea, he replied"I dont think so, I've never seen rosacea on a child your age", but then ordered metrogel. The metrogel did nothing, after a month we went back to the dermatologist. This time he said "I think your son has ulerythema oophorogynes(sorry for the spelling)...he brought out this huge medical book and starterrd reading it to us..He showed me where HE thought my son was losing hair on the outer part of his eyebrows...He told me the only treatment was to try retin-A cream, or maybe laser surgery! We tried the retinA cream, and here in upstate NY where the winters are below zero, using RetinA cream in January combined with freezing winds, my sons face turned beat red. He used the cream for about a month. We returned to the dermatologist who said "I think you should go to Boston childrens hospital for evaluation for laser. At this point my son was like "forget it, the redness isnt that bad. " We got a second opinion. The 2nd dermatologist took one look at this skin and said.."there is nothing wrong with him,, "you must be Irish !'...(WE arent irish)..then he said ulerythema oophorogynes is a disease of the feet! At that point I knew I needed to get out of the office..He ordered hydrocortisone cream...At this point I was so frustrated but I figured before I go off for laser lets get one more opinion. We traveled an hour away to a dermatologist who specializes in laser , who trained at the mayo clinic. He said my son DiIDN'T have any thing wrong, just red skin.. He ordered him to use primacy 20, which is a vitamin C elixer that he put on his face daily, and also my son was to take nicomide which was a pill (nicin, and zinc- usually used to treat the redness of acne). He thought that the pills and the serum would decrease the redness. We uised both products for a few months, I thought the redness was decreasing, but it was summmer time, and my son was going off to sleep away campo for a week, and dint want to take all the pills and ointments, so he stopped using them " my skin doesnt bother me anymore"...also during this time my son lost 30 pounds, because he felt that if he was thinner maybe his face wouldnt be so red..His weight loss was slow, he looks great, and feels better, but I think the redness is the same. He complains about it sometimes, but I just once and for all want a diagnosis. We have never had a skin biopsy, in fact I never even heard of one for these disorders........sometimes I do think that going to a specialist in boston is still the answer..If laser surgery would help the redness I would have it done, but then there is the question of what kind of laser...pulse dye, v- beam...the first dermatologist said the laser needed to be done by someone who knows about these disorders and has lots of experince...where are those Dr's...any advise? Sorry this is so long, but I had a lot to tell you..Thanks...

Hi, I am going through the same thing with my 13 year old son. He was diagnosed with KP when he was young, but at that time there was no redness. Now he has the redness on both cheeks with the white spots in the middle. He has been diagnosed with acne, eczema, and now the derm says he can't tell what it really is without a biopsy and just recommends doing pulse dye laser treatments without doing a biopsy. I am going to see another derm soon. He has tried elidel and hydrocortisone. Neither helped - good luck. Let you know what happens at the next dermatologist.

When is the next derm appointment??? Does your son's face look red all the time?? Mt son's does, and when he gets home from school his cheeks are so red they almost look purplish...I think it bothers me more then him...he has a good attitude about it. One time we were in Disney World waiting in line for a ride, he saw a boy about his age waiting in line also, he asked me if I thought the other boy had "what I have"....We arent sure if my son has KPRF,. or ulerythema oophyrogones, or KP, or just red complexion...but my instinct tells me that there is something going on there...The part about the ulerythema oophyrogones that worries me is the first dermatologist that we went to see said that his eyebrows could fall out!!! That is always on the back of my mind now!... Where are you located? and have you seen the pictures that are on the internet of the boy with rubra faceii? I'm not exactly sure where I saw the pictures, but I thought my sons cheeks looked exactly like the picture, but 2 dermatologists sort of laughed at me...saying your sons cheeks are smooth, there is no roughness, he doesnt have that....keep me posted...bye

I wouldn't worry about ulerythema oophyrogones too much. I have this condition and it doesn't involve your eyebrows falling out. It is simply responsible for the fact that your outer eyebrows are thinner (less hair density) than the inner eyebrow. I don't believe ulerythema oophyrogones is responsible for any hair loss beyond the initial thinning.

hoyhoy5 - Yes my son's face looks red all the time. His next derm appointment is mid May. His face sometimes almost looks bruised after he has exercised

These are all just another example of dermatologists ignorance.

What the hell do they do?

Come up with different names to call pads soaked in alcohol?

I think dermatology is a scam.

I feel for the moms. I remember when my mom took me thru the rounds to try and find a cure for the redness because she knew it bothered me.

The honest truth at this point as far as im concerned is that the redness is there to stay. All you can do is accept it, keep it under control mentally as best you can and thats it.

Sucks but its true as far as I can tell.

Best of luck to you all.

squibb - how long have you had the kprf? What have you tried for the redness? Ever tried laser treatments?

I dont know that I have KPRF. I still am unclear on the difference. All I have now is redness on the cheeks and the red bumps on legs and arms.

Laser treatment? For what? I have seen nor heard any evidence it works and i am at a job now with no benefits. I cant afford it.

Sorry I cant help more.

I have to agree with Squib.

On a side note, I wish this site were more active. However, I think the reason the forum isn't more active is precisely the reason why the dermatologists don't have a clue about how to treat KPRF. The fact of the matter is, there aren't too many of us out there. And they certainly aren't going to spend too much time on our condition at med school, and they probably won't come accross KPRF in residency either.... Thus the professional ignorance.

Here is a brief bio of myself.

--I was two when I was diagnosed with KP on my arms.

--at age 11-12 my face turned splotchy red only after intense exercise.

--At age 14 I began having facial flushes during stressful situations.

--at 16 some erythema had set in permanently.

--during puberty, KP spread from arms to forearms, ankles, thighs, love handles, butt, stomach and chest.

--Had 6 photofacial treatments at age 24--had zero effect.

--redness has slowly progressed into my 29th year.

--fewer flushes after being treated for generalized anxiety. redness remains.

Best Medicine is learning to cope with the condition. Nothing seems to help it.

Sorry for being so down, but as of right now, there is litterally NO TREATMENT for KPRF.

...with prednisone. i was prescribed it for a poison ivy rash and my arms completely cleared up. I want to find out if you have learned anything more about it since your post last year. I tried to reply to that post but got an error message. Do you still think there might be an allergy connection?